Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Saturday, January 19, 2013

Belgian Suicide: Marc and Eddy Verbessem

Stephen Drake at Not Dead Yet has published two blog posts about the suicide of Marc and Eddy Verbessem. Assisted suicide has been legal in Belgium since 2002. The Belgium Act on Euthanasia as I understand it requires a person seeking assisted suicide must be in a "medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from an incurable disorder caused by illness or accident". As Drake has pointed out, media reports are hardly comprehensive and the exact circumstances of the assisted suicide has not yet been made clear. I doubt the Verbessem brothers qualified for assisted suicide. While many interested in this unusual case will focus on the legal implications, I am far more interested in the cultural ramifications. The implied message the Verbessem assisted suicide is not hard to assess: death is preferable to life as a blind deaf person. This line of logic is not uncommon when disability of any sort enters the equation. Long ago it was widely accepted that a person that experienced a cervical spinal cord injury could not have an acceptable quality of life. This as most readers would agree is simply wrong. The same can be said of the decision that led to the suicide of the Verbessem's. The National Federation of the Blind President, Dr. Marc Maurer released the following power statement:

This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences. Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges, but from at least the time of Helen Keller it has been known that these challenges can be met, and the technology and services available today have vastly improved prospects for the deaf-blind and others with disabilities. That these men wanted to die is tragic; that the state sanctioned and aided their suicide is frightening.

Frightening is apt. The Verbessem's were not unique. Many people who are blind and deaf live long productive lives. The only thing that makes the Verbessem's unusual or unique, is the way they died. Many news reports I read used the word "mercy" to describe the assisted suicide. Based on comments I read that accompanied news stories, many will perceive this to be a perfect example of a mercy killing. Hundreds of stories have been published in the last few days. Not a single story I could find included a quote from a person that is blind and deaf. Not one. To me this is a perfect example of disenfranchisement. It also illustrates how badly disability is understood. This is hardly a new phenomenon. Children are taught about Helen Keller. The film the Miracle Worker is considered a classic. Most know about Keller's supposed heroic ability to adapt to her disability. Precious few people know Hellen Keller was an ardent socialist. She wrote:

I had once believed that we are all masters of our fate - that we could mould our lives into any form we pleased... But as I went more and more about the country I learned that I had spoken with assurance on a subject I knew little about. I forgot that I owed my success partly to the advantages of my birth and environment. Now, however, I learned that the power to rise in the world is not within the reach of everyone.

Keller is spot on about power or the lack of power. The wider lesson associated with the Verbessem assisted suicide is we live in a society that dis-empowers people with a disability. We are too often set up to fail because adequate social supports are absent. Couple this with rampant disability based discrimination and the consequences can be deadly, particularly in a county such as Belgium that enthusiastically embraces assisted suicide. Perhaps this case is a harbinger of the future in the United States if assisted suicide is widely accepted. A grim thought.

4 comments:

Lynn, I am not at all convinced all the facts reported are correct or complete. People with a disability routinely encounter discrimination when accessing the health care industry. This discrimination can manifest itself in a wide variety of ways. I suspect the reason for this is symbolic--people with a disability represent the limits of medical care.

Hello. I am deaf myself and regularly volunteer for a deafblind organization. You are right.

The deafblind community was so upset about this, especially the fact that news organizations never bothered to interview deafblind themselves to get their insight in this.

I asked my deaf friends in Europe about this. They were puzzled because Belgium does have a strong deaf and deafblind community. The brothers live about 30 minutes from Brussels, Belgium. They live about 3 hours or so train ride away from Amsterdam. They could've easily reached out to deafblind communities.

What strike me to be strange is that the deafblind brothers seem to not be well connected to deaf communities in Europe. The articles say that they use home signs, not Belgium sign language.

Had they been well connected to deaf and deafblind communities, had the society have gotten rid of stigmas, bias, and discrimination toward deafblind people, perhaps their deaths could have been prevented. This is too sad.

Carlisle, Delighted to get your perspective as a deaf person. There is much about this story that makes no sense. In one report I read it stated the twins in question had a form of sign language that was specific to them. I too suspect they were distanced from the blind deaf community.